A collection of personal stories, articles, and news from the PRRF community.
Sit back and be amazed. Your child is a gift. All children are amazing and special in their own ways. All children are unique. We have three boys, and we adore each one for their individual personality. We certainly don’t have a favorite child. But I will say, without reservation, Sean has opened our eyes, our hearts, and our minds to a whole new world.
Read MoreThe Roman poet Horace once said, “Adversity has the effect of eliciting talents which in prosperous circumstances would have lain dormant.” Ever since I stumbled across this quote in my English class, I have contemplated its meaning and all the ways in which it relates to me.
Recognizing that everyone’s situation is different, I share with you how these words have inspired me with the hope that others may find some inspiration in them, too.
Read MoreBrandon has never let his visual impairment keep him from “moving up the fish ladder of life”. He never stays at one level very long. He is proud of his accomplishments but most importantly, he is always looking for young fish behind him to get to the next level, whether it is by direct personal assistance or advising on the development of a phone applications, to help them be successful in a sighted world.
Read MoreMiles has been swimming up the Fish Ladder of Life since the very beginning. He continues to rise up the ladder to higher waters; Miles is still on his journey and he is lending his gifts of expression for all of us to enjoy and look at in amazing wonder! Every time one looks at one of his paintings, the individual leaves with a different interpretation, not only of what message the painter is trying to convey, but also what we, as observers, interpret in his creativity.
Read MoreDespite laser treatment at 3 months of age, Michael and Elizabeth’s ROP progressed at a very aggressive rate and multiple surgeries were performed on each child during the first fifteen years of their lives. Despite best efforts, both have only light perception vision with no ability to read the printed word. The lack of vision was the largest fish ladder that both had to negotiate in their early years, but, like the fish trying to make their way home, both children had a fierce determination to excel and external support.
Read MoreJules is a delightful young woman and an inspiration to all who live with vision problems. Despite being visually impaired, she continues to move on with her life, learning in every possible way with an appreciation for the aids that help her navigate the world.
Read MoreBen has plans to major in business, international relations, or chemistry when he goes to college next year, but in the meantime, he has majored in heart. His empathy for other children with vision problems meant that many others benefitted from his drive and caring.
Read MoreRebecca is a wonderful example of how a caring group can make an impact. The financial donations and the awareness which were raised are very meaningful contributions to the work of the Pediatric Retinal Foundation.
Read MoreCalvin thinks it is “cool” and “fun” to look ahead to new ways of managing his life. He is very open about his disability and willing to share his story. He would like others with disabilities to not think they will not succeed because of their situations but to have a belief that they will prevail.
Read MoreAria’s journey began in October 2014, at just two months old. Her parents noticed she was often having rapid eye movements and urged their pediatrician to send the family to a pediatric ophthalmologist. The ophthalmologist contacted Associated Retinal Consultants immediately upon their first visit, and Aria was seen the very next day. A week later, after her first exam under anesthesia, Aria was given the diagnosis of familial exudative vitreoretinopathy (FEVR).
Read MoreAs soon as we faced the realization that Juliana would live a life of complete darkness, our first worry was how she would be able to go to school. I’ll never forget the sweet kisses and cuddles I gave her, rocking her while whispering in her ear, “I will never let you down!” I was determined to never break that promise to her because I knew that as her mom, I would be her biggest cheerleader and advocate!
Read MorePresley has been learning how to walk with a cane and will soon begin learning Braille. She amazes us every day with how easily she picks things up and adapts. While we would give anything for Presley to be able to see, she has given us a new perspective on life and changed our world for the better. We are so thankful for Dr. Capone and the work that PRRF is doing to help families like us.
Read MoreDr. Al-Shabrawey is an expert on the study of diabetic retinopathy, a major cause of blindness worldwide, and has published more than 65 refereed articles on the disease in the past 20 years. His research funding since 2007 has included major grants from the National Eye Institute and the American Heart Association, and he currently possesses an NIH R01 grant that extends to 2024.
Read MoreWhen Chuck’s third child, Collin, sat too close to the TV, he and his wife thought that was merely unusual. The day after Christmas, when Collin was around 5 years old, the family learned that he had congenital X-Linked retinoschisis, splitting of the retinal layers, and there was no treatment and no cure. It was predicted that Collin would eventually be blind.
Read MoreNate loves music. he began to take piano lessons when he was 5 years old. He studies the solfége method of musical training period with a great 'ear' for music, he has no problem reproducing the sounds that his teacher plays for him and was able to reproduce on the piano the classic 'Lightly Row' after he heard it at a concert. A greater challenge is using the proper fingering to play the piano, but he has been practicing and is able to apply that skill when he is learning Braille.
Read MoreMy husband Rob and I were absolutely thrilled to welcome our third baby girl Rachael into our family. When she was 5 weeks old, we noticed she didn't respond like her older sisters, Sophie, 5 and Isla, 3, when they were the same age. At 12 weeks old we took her to an ophthalmologist where we were told she was legally blind. Our world came crashing down. She was diagnosed with Familial Exudative Vitreoretinopathy (FEVR).
Read MoreBoth of our daughters have been diagnosed with FEVR. Therefore, you can understand why this foundation is dear to our hearts. We appreciated all of your hard work and are hopeful for a cure in the future.
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